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Discussion Starter · #1 ·
Hi Everyone,<br>
I don't know where to start. My mind is spinning with all of the new information I just receieved about my son. Hopfully someone can have some words of advice on what to do next or if my plans for what to do next are missing anything. Some background on J, my son who is 11-years-old. J is the youngest of 3 kids. He had delayed speech but I thought it was just a youngest child speaks later stuff. At four I had him evualuated and they found he had significant speech delay. At 4 his speech was at an 18 month level and we found he needed tubes. Tubes where put in right before he started kindergarden.<br><br>
In kinder we found that he was delayed. When he was coloring he would start with his left hand and then where most kids would move the paper to continue coloring J would switch hands and continue to color. He used both hands equally but when offered a pencil would always take it with his left hand first. At the end of Kinder they held him back and made him use his right hand, only. We were told that by using both hands it was holding J back and he was unable to master simple skills due to using both hands. He had his first IEP in Kinder for speech.<br><br>
For the next 5 years (up to two weeks ago) I have repeatedly said there was something wrong with the way that J processes information. He isn't normal. To which I was told "well you have gifted children and J is normal so he appears slow but he really isn't." I want to make it clear J is an intelligent child with a vivid imagination.<br><br>
When the IEP review for J's speech came up they were going to discontinue his speech because he tested out of speech and no longer qualified. When J's teacher got wind of this an IEP review meeting was called. To make a long story short they did a ton of testing, half of which I do not understand and did not have enough time to have my questions fully answered. During the meeting the speech therapist came under fire for discontinueing J's speech but as she stated he tested out of the guidelines for qualifying for speech, yet this is a child who no one but his family can understand, and even at times we have to ask him to repeat himself because we cannot understand him.<br><br>
To sum it up J's speech is not understandable by his teachers, or his peers. His handwriting is not legible and cannot be read by his teachers or his peers. J cannot be understood in speech by anyone outside of his family and his writing is not legible by anyone, including his family. He cries easily, has difficulty making and keeping friends at his own age level. Here are some of the test results. Full scale IQ - Low Average, Nonverbal IQ - Low Average, Verbal IQ - Low Average, Fluid Reasoning - Average, Knowledge - Average, Quantitative - Low Average, Visual-Spatial Processing - Borderline Delayed, Working Memory - Average. One test result that I found confusing is that they said his dibels score is effected because he mispronounces so many words then in the next paragraph say that he is above grade level on DIBELS assessments? They said that he can say and define words in a sentence but when given the word alone he is unable to do it. His teacher says that he reads and comperhends well and has great ideas but when asked to write those ideas on paper he struggles. What he wasn't given was a diagnosis. His IEP is under communication disorders. I was shocked to read/hear them say that J is aggressive on the playground and with his peers. J has never shown any agression nor have I ever been told J acted agressively towards anyone, let alone his peers.<br><br>
His IEP has been revised from a speech IEP to a special education IEP. He will be given accomendations to teach him how to type, given more time when given longer assignments and those assignments will be broken down into smaller steps. If the assignment is a long written answer he will be allowed to type it rather than write it.<br><br>
I have checked with my insurance and we are covered for OT, language and speech services and also for psychology. All of which I will be requesting on Monday.<br><br>
Some of his behaviors are really ... odd. His room is a mess. I can tell him to pick up his clothes but he will pick up one shirt and then move on to something else. I have to stay in the room and give him one step at a time in order for it to be clean. I started putting out his clothes for him the night before and still have to check him before he leaves the house because he will put on dirty clothes and leave. He does things like will put on a shirt backwards and because the dirty is on the other side he "thinks" it is clean. He constantly loses things. We have started having anything that needs to be sent home sent with his brother or I never get it, it gets lost. He can spend hours and hours by himself playing. He takes things that others would see as trash, such as empty grocey store bags and makes toys out of them. If you try and throw them away he gets distraught that you would throw his toys away.<br><br>
Now on for the broken hearted mom. J is such a sensitive child. One who is easily hurt, finds the good in everyone and everything. After the meeting at the school I came home and cried. My heart broke for this child of mine who struggles so hard and I didn't even realize just how much. Getting J to do any homework is difficult to say the least. No amount of consequences will get him to do it. At school they have started to reward (bribe) him to do and turn in his homework. They are having J volunteer in the special needs classroom for the kids with more challenges. J came home from school when he found and he was so excited about it. His exact words were "Mom guess what I get to do? I get to serve the other kids, what an honor it is to be able to help and be of service to them." All said with a huge smile on his face. This is the same child who is bullied, teased, called names and cannot communicate, for the most part, with his peers..... my heart breaks for him <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

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I am nursing my little one right now so I will come back to post more, but I know how hard it is to see alot of views and no replies. Sometimes the weekends are pretty quite here. Welcome to the group though I am sure others will respond soon too.
 

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"They are having J volunteer in the special needs classroom for the kids with more challenges. J came home from school when he found and he was so excited about it. His exact words were 'Mom guess what I get to do? I get to serve the other kids, what an honor it is to be able to help and be of service to them.'"<br><br>
Congratulations. You have a son whose mind and heart are more correctly aligned with the proper order of the universe than those of most other 11 year-olds. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up"><br><br>
It seems obvious from your post that he faces some developmental challenges, and that he needs a higher level of intervention than he has been getting so far. Much as the process sucks, an IEP for communication disorders is a good thing to have. It is the first step to getting the correct services in place.<br><br>
I would not assume your son is definitely low-IQ based on these initial tests. It might turn out to be true, but if he communicates verbally to you and yet people outside the home cannot understand him when he speaks, then there is no way that an outsider can accurately assess his IQ at this point. My so was assessed low-IQ a couple of times before the his communication issues were ameliorated and he started assessing high-IQ. I would just put that part out of your mind, work on the communication thing, and come back to it in a few years when it comes time to decide what kind of adult life your son can best be fitted for. Don't despair. It is a really good thing that you now have more insight on what is going on at school.
 

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Poor baby. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
Has anyone ever mentioned sensory needs to you? It sounds to me like your son has some sensory issues--that thing you described that happened in Kindy, what they call "crossing at the midline"--that's when you can use your right hand to do things on the left side of your body and vice versa--<br><br><a href="http://www.henryot.com/news/sensory_diet_applications_review.asp" target="_blank">http://www.henryot.com/news/sensory_...ons_review.asp</a><br><br>
Anyway, forcing him to use one hand ignored what was causing the problem, and, I'm guessing, because some of these issues were never addressed early on they're cropping up later:<br><br><a href="http://gigli.tripod.com/therapies/midline.htm" target="_blank">http://gigli.tripod.com/therapies/midline.htm</a><br><br>
I'm not an OT, this is just a mom guessing--the fact that your son's teachers just forced him to only use one hand makes me <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">
 

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Discussion Starter · #6 ·
Thanks for the reply's. It's hard to have all this information thrown at me and not understand half of what it means.<br><br>
When J was in Kinder there were some other issues that we thought had been resolved but now I am finding out not so much. It took him a long time to settle into the rountine in Kinder. When we recently moved he took over a month to settle into the classroom. When he first started Kinder he would cover his ears and cry and say it was to loud. He was not able to function when it was to "loud." I was told it was because he was still adjusting to having the tubes in his ears and now that he could hear everything seemed extra loud to him but he would adjust. He did that for about 6 months after his tubes were placed but then I never heard anything again so I assumed he was better. In Kinder he did not hop or skip. He also wasn't able to balance on one foot or other "normal" kinder behaviors but we were told it would come he was just delayed but they were not concerned. J only recently learned and was able to balance enough to ride a bike by himself. He can tie his shoes but it is difficult for him, all of which I thought was because he is ambidextrous.<br><br>
J doing everything with two hands I thought was because he is ambidextrous. His father writes with his left but throws a ball, shoots pool and a gun with his right. I write with my right but shoot pool and a gun with my left. Both his father and I can write with the other hand and you can read it but it does look like a kid in 1st grade wrote it. The test results, done by the OT at school, say he is now right hand dominate.<br><br>
I have questioned for years why speech therapy seemed to not be helping J. His problem is in artigulation, which in turn effects his spelling. An example is the word wolf. He pronounces it woof and when asked to spell the word, even when you walk him through the sounding out of the word, he spells it woof.<br><br>
When he writes the letters are bunched together with no spacing, he doesn't write on the lines. When he comes to the end of the line rather than going down to the next line he continues by writing on the side or wrapping the words up the paper. He still switches letters like b and d, p and q, and he also writes some letters and numbers backwards like 3 and e. When he copies from the broad he still uses no spacing and his spelling is wrong. Also the way he holds a pencil is very light and he never pushes hard enough so what he does write is very light and difficult to read on top of the other written problems he has.<br><br>
I've been reading your replys and writing my response and the entire time J has been outside, by my window, with a stick he found and has been playing by himself for the last hour. If one of the kids were to go outside he would gladly include them in the game but is just as content to be alone. This is common behavior for J. Maybe I'm being sensitive but I wonder how much of this behavior is because he is used to be teased and shunned so he has learned to play alone.<br><br>
The mom in me is mad at myself for not picking up on this before now. Not realizing just how hard life has been for him and not advocating for J before now! I should have fought harder when they brushed my concerns aside.<br><br>
*ETA*<br>
J's IEP has always been under communications disorder with the qualifying disability being speech. Now he qualifies under speech and a learning disability. They have not said what learning disability though.
 

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Discussion Starter · #7 ·
another thing I do not understand is with J basically having no way to commuicate or be understood WHY is his new IEP calling for speech once a week for 30 minutes? Why is OT for once a week for 30 minutes?<br><br>
They have him in the resource room for 30 minutes everyday but said it would be determental for J to be full time special ed ... how much more determental is it for him to be constantly not understood, having little to no "good" interactions with his peers or in the classroom.<br><br>
The school phych said this about what she saw when she observed J in the classroom. "the children were doing a vocab exerise where they were given a word and asked to spell it and use it in a sentence. J was given the word joyful which he spelled joful and the sentence he used made no sense and he was given no points. J went to his desk, put his head down and cried. He stayed there until the exerise was over. He then got out his AR reading and read quietly. He was praised for following directions."<br><br>
WHY would the teacher put J in the position to fail? They know J is struggling in those areas yet he was put in the position of failing the exerise AND his peers saw him upset and crying. At a 4th grade level kids can be brutal to each other so once again WHY would she do this to my child <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/angry.gif" style="border:0px solid;" title="angry"><br><br>
The resource room teacher said she is concerned for J to be in resource next year because "he volunteer's in with the kids with more challenges that he may see that he is not smart, which make no mistake J is a very smart kid and he will pick up on the fact that he will be in resource with the same kids that he volunteers with."<br><br>
I have been rereading the IEP results and finding more information that didn't "stick" the first time I read it. Oh and none of this services will be applied until next year!
 

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Hugs. I don't have any answers, sorry. I did want to comment that he sounds like he may have low tone--the inability to balance, holding the pencil, etc seems to fit that. He sounds like a sweet, wonderful little boy!
 

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That absolutely breaks my heart. Seriously. I'm crying. Your poor sweet boy.<br><br>
Your description reminds me a lot of my own son who is six. He's also sensitive and imaginative and vulnerable to mistreatment.<br><br>
Sigh. Some thoughts?<br><br>
1. You mentioned lots of things (his writing issues, spelling issues, etc.) that are on flags for dyslexia. <a href="http://www.dys-add.com/symptoms.html" target="_blank">http://www.dys-add.com/symptoms.html</a> Take a look at these. The schools generally don't test for dyslexia. And often they don't use the right programs to help either. We're doing it on our own.<br><br>
2. It sounds like he needs protection. Is he being picked on/bullied? What is being done to protect him? It sounds like he's excited about his new role and if he enjoys school, he's being protected from bullying etc., and they are meeting his academic needs adequately ignore this next part. Also I realized that it's not the best for every family (or every child). But my son is doing better in a homeschooling environment.<br><br>
3. You might not want to read the next part right now/it may not apply anyway. My son has a spectrum (PDD-NOS) diagnosis. It may not fit your son (my son's PDD-NOS diagnosis means fits the criteria but doesn't completely) but if you're seeing spectrum area weaknesses spectrum type interventions will be good fits whether the child meets the actual criteria or not.
 

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Discussion Starter · #10 ·
Thanks for the thoughts.<br><br>
I actually do the K-12 program with my girls and was going to enroll J into the same program. K-12 is a "public" school but most things are done online, they do have teachers but we do it at home and I am the learning coach.<br><br>
I did bring it up to the school psych and she said that the school would still provide J with OT, speech and resource and would work with WAVA to see that his IEP needs are met. The WAVA special ed director is the one who brought up that they do work with the school's for IEP's but not all of the schools will, J's will though.<br><br>
I will also find out on Monday about private OT, speech and counseling for J.<br><br>
The school says that J is agressive towards the other kids verbally but his brother says that J is picked on and that the other kids call him names like "weird" "retard" and "stupid." J also comes home with brusies but when I talk to the school they told me that they have not seen any of that and J, when asked, never says anything. *ETA* J does not "see" mean actions or behaviors. When someone is mean to him he says "they weren't mean" or "they didn't mean to it's ok." When someone is mean to him he is quick to forgive and NEVER holds a grudge, ever. He does see when it happens to someone else as mean but not when it happens to himself.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> poor mama! J sounds like a wonderful boy who is trying his darndest!<br><br>
I'm going to get very basic here...has he had a thorough hearing test? And has his palate been looked at by an ENT? Hearing issues can be very subtle and structural issues with the palate can easily be missed. Both can lead to speech, articulation, and spelling issues.<br><br>
Obviously that wouldn't explain everything, but both of those are potentially "fixable" and could make a difference.<br><br>
Aside from that...I think that the change to K12 might be a good one for him. I'm really glad that your school will still honor his IEP with him in K12, I've been told that our local school does not.
 

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Discussion Starter · #12 ·
J has his hearing and ears checked every year by the ENT. Actually it is the same ENT that put his tubes in when he was 5. They always give him a clean bill of health and say he does not need tubes and he passes every hearing test. He is due for another physical and I will request it again and bring up the palate possibility. Thanks for the idea, never thought of it.<br><br>
In my district I have the option of doing k12 full time or only partial. At the time I didn't ask what that meant but I'm guessing that is why he can do OT, speech and resource at the local school but do the rest at home.<br><br>
On a side note I have a brother with extreme dyslexia. That brother is 30 now but reads at a 2nd grade level despite intervention in school. Three out of my four brothers all had to have tubes as well as speech so there is the family history of it.<br><br>
When I first started college I was told " because your reading comperhension levels are so high it bumps you out of range for services. You probably do have a learning disability but because of your scores we cannot offer services."
 

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Discussion Starter · #14 ·
No J has not seen a neuro, yet. However his father did bring it up yesterday when I talked to him, well his mother brought it up. Because of complications of MS most of the discussion and decisions are made by me and J's grandmother after she talks to him. J's father is unable to remember conversations well anything that is short term memory. An example is he does remember J's birth and early years but not recent things. J was 4 months old when his father was Dx'd with MS. Before J's father was Dx'd with MS there was no family history of MS. J's father has progressive MS and has declined rapidly since his Dx.<br><br>
J's father has Multiple Sclerosis and his paternal grandmother has myasthenia gravis both of which are from the same autoimmune disorder family according to J's father's neurologist.<br><br>
*ETA*<br>
I do not think that J shows any signs of MS or myasthenia gravis however I do think a lot of his "problems" are neuro based. I *think* I have to get a referal for a neuro though. I will check into it.
 

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I would definitely go that route if I were you. Just because a neurologist will be able to rule out a lot of physical things. I know a lot of people on here are leery of neurologists, and I'm biased because I work for one that also cares for my son. If you can try to find one that specializes in pediatrics. They are few and far between, but they are out there. Also be prepared to wait a long time to see them. Probably months. The good ones are worth the wait.
 
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